13 weeks 2 days ago (3 months 1 day ago)....Chiari Decompression Surgery-5 days hospital
10 weeks 2 days ago....Chemical Meningitis-3 days hospital
8 weeks ago today....Diagnosed with Papilledema
7 weeks ago today....Lumbar Puncture diagnosed with Pseudo Tumor Cerebri
4 weeks 3 days ago (1 months ago) Lumbar Drain Trial-8 days hospital
So Dammit....When Gabe gets his shunt placed. I refuse for there to be ANY complications Pre/post surgery, during recovery, ever. His shunt is going to work. He is not going to LEAK or get the "M" word. His shunt is not going to CLOG, BREAK, or JUST NOT WORK.
I REFUSE TO ALLOW ANYTHING MORE TO HAPPEN. I AM DONE...DO YOU HEAR ME SO DONE!!!! 5 year olds should not be on methadone and tylenol #3 round the clock. They should not be able to tell you how to put in an IV or do a Spinal tap or what a lumbar drain is.
DEEP BREATH!
Okay. I am better. I just needed to VENT. Well it was either that or open my cabinent and start throwing stuff, but since my pfaltzgraff pattern is retired and I could throw those damn PURDUE glasses but then I would have to sweep the floors and pay for co pays to the peds when the kids got little shards of glass that get into the hardwood floors in their feet, I will pass on that. So, I needed to vent. :)
Friday, September 28, 2007
Tuesday, September 25, 2007
There are just so many funny things that have happened the last week or 2. But when I sit down to blog about them, I cannot remember them. Then I will go to lie down in bed at night and I will thinking of them. I need to keep a note book next to my bed.
Aunt Becca came over last Thursday so that we could bake goodies for the Ronald McDonald House. We made 2 dozen cupcakes, 4 dozen cookies, and 4 dozen brownie bites. The children had a wonderful time helping and baking. We only had 1 little mishap and that would be the 2nd degree burn Hannah sustained to her left index finger. Because of the meds she is on she has a delayed reaction. So she kept her finger on a hot baking sheet longer than she should.
However Aunt Becca was discussing how your left hand makes an L and that his how you know that your left hand is actually your left hand. All of a sudden Gabe turns his right hand palm up and says, "Look Aunt Becca my right hand is now my left!". Then he roared. He thought he was hysterical. Becca and I did too so we also started laughing hysterically. LOL
Here is a link for the rest of the Cookie Pictures.
Also, I will be walking a 5K for Comer Children's hospital. You can read about it here. We are hoping for Gabe to be able to participate by riding in the wagon or the wheelchair. Whichever will work.
Aunt Becca came over last Thursday so that we could bake goodies for the Ronald McDonald House. We made 2 dozen cupcakes, 4 dozen cookies, and 4 dozen brownie bites. The children had a wonderful time helping and baking. We only had 1 little mishap and that would be the 2nd degree burn Hannah sustained to her left index finger. Because of the meds she is on she has a delayed reaction. So she kept her finger on a hot baking sheet longer than she should.
However Aunt Becca was discussing how your left hand makes an L and that his how you know that your left hand is actually your left hand. All of a sudden Gabe turns his right hand palm up and says, "Look Aunt Becca my right hand is now my left!". Then he roared. He thought he was hysterical. Becca and I did too so we also started laughing hysterically. LOL
Here is a link for the rest of the Cookie Pictures.
Also, I will be walking a 5K for Comer Children's hospital. You can read about it here. We are hoping for Gabe to be able to participate by riding in the wagon or the wheelchair. Whichever will work.
Wednesday, September 19, 2007
Long time no blog
I have had a very rough time since Gabe's decompression surgery. I finally figured out that most of it had to do with me keeping my keepings bottled up. I don't want to post it over at caringbridge as that is suppose to be about the kids and not me. But I have been afraid to blog it here for fear that the EVIL ones will read it and send me more nasty emails about how I wanted this. But I need to blog this for my own good. If you do not like it. Then don't read it.
Emotionally I have been through the ringer. When Gabe had chemical meningitis and they told me that his CSF pressure was only 11 and he was so symptomatic of being high I lost it. I cried and cried and cried. I never cry. Tests, surgeries ect are matter of fact. To be completely honest with you the whiny parents in the waiting room drives me nuts. For the love of God people there are OTHER PEOPLES KIDS ones who are still WAITING to go back for their surgeries sitting out here. You are freaking them out. Suck it up. DEAL ALREADY! I felt like I was becoming a whiny parent.
I have continued to cry. Papilledema...I cried....Elevated pressure....I cried. I cry because he has pain. I cry because I am exhausted because rarely does he sleep. I cry because this just pisses me off and I can no longer even verbalize my frustrating.
The day that took the topper was when Gabe had his drain trial. That was his 17th time under general anesthesia. The dark thoughts drift into your head. Your kid goes under general one time....No biggie the odds are in your favor. Your kid goes under multiple times, you start to worry about when the odds will not be in your favor.
I got weepy when Amanda came in to get for surgery. I pulled myself together. We walked to the double red lines. That is such a long walk for such a short distance. He gave hugs and kisses and I love you's. Amanda had stopped at the desk to page the NS and I just walked passed her as she told me it would be okay. I must have freaked her out a bit as when I was trying to open the door to go to the waiting room (and then continue my flea to outside) I could not get the door open and she came back and grabbed my hands as I was trying to get the door opened and told me that I did not have to go out there yet. I just lost it. I composed myself the best that I could and we walked into the waiting room. Looking at all those parents who were there for their kids to get tubes in their ears or circumcisions I wanted to scream at them all. I wanted to run away. And so I did. I told Darren that I needed to go outside and get some fresh air. Darren knows I never leave until they call to tell me that surgery started and he was a little concerned. He talked to the receptionist and I headed to the elevators.
Down we went. I text messaged people to tell them that he was taken back for surgery. I talked to a lady from my moms work to give my mom the message and I hung up. We walked back into the lobby and I heard a Hey Guys! I did not at first recognize the person and it was Sheri Dr. Fr ims nurse. I said hi and just got all weepy again. Darren wanted to go and eat but I was not hungry and he did not want to leave me alone. I told him to go but if I saw or smelled food I would vomit.
It was just over an hour for his surgery and they called us back. We walked back there and saw the drain collection device and I wanted to run like hell. Run as far away as I can. I did not and we stayed in the recovery until they got his room ready.
It was a long 8 days in the hospital. It has been long weeks since his procedure. He now knows what it is like to have pain free days. And well he wants it back. He is none to happy that he has to wait. :(
I still have my days. It makes me so mad that he has to suffer. Let me try to explain here what the days are like when I try to describe them.
"Good Days"---Days when his pain will respond to medications and come from a 5 (on a 0-5 scale) to a 4. These are also the days when he can actually act like a little boy. The days he can run and play outside without crying within 5 minutes that he hurts and wants to go inside.
"Normal Days"---Days when his pain stays a 5. The meds may help his pain come from an intense 5 to a mild 5. And yes these are descriptions Gabe gives. These days our huge activity from him is playing on the computer. Maybe playing in the playroom for a few minutes.
"Bad Days"---Days when the meds dont touch the pain. Days when his biggest activity is getting off the couch to go to the bathroom or walk upstairs for meals. These days result in a lot of movie time. Lots of him sucking on his fingers.
"Horrid Days"---Days when he is in so much pain he screams at us. Pain meds dont work. He yells, screams, says mean things and does mean things. He is just pushing out of control. He hurts and does not understand why he has to hurt and others do not. These are the days he gets very frustrated and usually cries about wanting to be normal.
"Status Quo" means that we are having one of the 4 before mentioned days. Any of these days and vary over the course of a day and often do.
Well my friends. AS much as I would love to blog more. I must sleep. Speech therapy tomorrow for the boy....Great!
Emotionally I have been through the ringer. When Gabe had chemical meningitis and they told me that his CSF pressure was only 11 and he was so symptomatic of being high I lost it. I cried and cried and cried. I never cry. Tests, surgeries ect are matter of fact. To be completely honest with you the whiny parents in the waiting room drives me nuts. For the love of God people there are OTHER PEOPLES KIDS ones who are still WAITING to go back for their surgeries sitting out here. You are freaking them out. Suck it up. DEAL ALREADY! I felt like I was becoming a whiny parent.
I have continued to cry. Papilledema...I cried....Elevated pressure....I cried. I cry because he has pain. I cry because I am exhausted because rarely does he sleep. I cry because this just pisses me off and I can no longer even verbalize my frustrating.
The day that took the topper was when Gabe had his drain trial. That was his 17th time under general anesthesia. The dark thoughts drift into your head. Your kid goes under general one time....No biggie the odds are in your favor. Your kid goes under multiple times, you start to worry about when the odds will not be in your favor.
I got weepy when Amanda came in to get for surgery. I pulled myself together. We walked to the double red lines. That is such a long walk for such a short distance. He gave hugs and kisses and I love you's. Amanda had stopped at the desk to page the NS and I just walked passed her as she told me it would be okay. I must have freaked her out a bit as when I was trying to open the door to go to the waiting room (and then continue my flea to outside) I could not get the door open and she came back and grabbed my hands as I was trying to get the door opened and told me that I did not have to go out there yet. I just lost it. I composed myself the best that I could and we walked into the waiting room. Looking at all those parents who were there for their kids to get tubes in their ears or circumcisions I wanted to scream at them all. I wanted to run away. And so I did. I told Darren that I needed to go outside and get some fresh air. Darren knows I never leave until they call to tell me that surgery started and he was a little concerned. He talked to the receptionist and I headed to the elevators.
Down we went. I text messaged people to tell them that he was taken back for surgery. I talked to a lady from my moms work to give my mom the message and I hung up. We walked back into the lobby and I heard a Hey Guys! I did not at first recognize the person and it was Sheri Dr. Fr ims nurse. I said hi and just got all weepy again. Darren wanted to go and eat but I was not hungry and he did not want to leave me alone. I told him to go but if I saw or smelled food I would vomit.
It was just over an hour for his surgery and they called us back. We walked back there and saw the drain collection device and I wanted to run like hell. Run as far away as I can. I did not and we stayed in the recovery until they got his room ready.
It was a long 8 days in the hospital. It has been long weeks since his procedure. He now knows what it is like to have pain free days. And well he wants it back. He is none to happy that he has to wait. :(
I still have my days. It makes me so mad that he has to suffer. Let me try to explain here what the days are like when I try to describe them.
"Good Days"---Days when his pain will respond to medications and come from a 5 (on a 0-5 scale) to a 4. These are also the days when he can actually act like a little boy. The days he can run and play outside without crying within 5 minutes that he hurts and wants to go inside.
"Normal Days"---Days when his pain stays a 5. The meds may help his pain come from an intense 5 to a mild 5. And yes these are descriptions Gabe gives. These days our huge activity from him is playing on the computer. Maybe playing in the playroom for a few minutes.
"Bad Days"---Days when the meds dont touch the pain. Days when his biggest activity is getting off the couch to go to the bathroom or walk upstairs for meals. These days result in a lot of movie time. Lots of him sucking on his fingers.
"Horrid Days"---Days when he is in so much pain he screams at us. Pain meds dont work. He yells, screams, says mean things and does mean things. He is just pushing out of control. He hurts and does not understand why he has to hurt and others do not. These are the days he gets very frustrated and usually cries about wanting to be normal.
"Status Quo" means that we are having one of the 4 before mentioned days. Any of these days and vary over the course of a day and often do.
Well my friends. AS much as I would love to blog more. I must sleep. Speech therapy tomorrow for the boy....Great!
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